Secondary Generalized Dystonia.” Just uttering the words causes Shelly Snitko to widen her eyes in an effort to keep the tears that have been collecting there from falling. Her effort does not work, and she grabs some tissue. As she shares her story from a small table in the corner of a local coffee shop, it becomes clear that this story is not about knowing how or why such a little understood condition could settle itself on her young son. It’s not about finding answers either. Shelly’s story is really all about the journey, one that began with a little strep throat.
It was Christmas time, 1995. Shelly and her husband Chris lived in Colorado Springs, Colorado, with their two children, and both kids were sick. A. J. and his little sister Lauren had each been born healthy, yet as A. J. grew he exhibited some subtle developmental delays. While his speech was completely normal, he walked late; and when he finally took those first steps, he did so on his toes. Tests all came back normal, so doctors diagnosed him with a mild form of cerebral palsy. When he was 8, A. J. had surgery to lengthen his tendons. That took care of the toe walking. He was doing so well and living the life of every boy his age. Surely a little strep throat now was nothing to worry about. After a few days on antibiotics, Lauren bounced right back, but A. J. emerged from his illness with some noticeable changes. It was difficult to hear him when he spoke, and he began making quirky faces that grew stranger and more alarming. He had trouble swallowing, and his balance was affected.
“We needed to find a new family practice doctor, and the Lord provided one that very same day,” recounts Shelly over a now cooled cup of coffee. The pain of remembering those days clouds her face, but she is sure to point out God’s providence. “The doctor examined A.J. and wrote a referral to the same neurologist who had already been treating him for his earlier issues. He already knew A.J. and could see the change in him. Further tests thankfully showed no evidence of a tumor, but we kept wondering what it could be. We had no clue.” Thinking it might be a possible storm in the brain in reaction to the strep infection or the antibiotics used to treat it, the neurologist sent them to Children’s Hospital in Denver for further testing. There they received a confusing diagnosis.
After just a few days in Denver, A. J.’s condition drastically deteriorated. He stopped talking completely and suffered painful spasms throughout the night. Several rounds of testing at Children’s gave them no answers. A. J. only got worse. Shelly remembers, “In just six weeks, my son went from being a normal 8-year-old boy to an uncommunicative person curled in a fetal position with spasms so severe he would punch himself, and he gave himself nosebleeds.” Shelly and Chris taught themselves ways to communicate non-verbally with A. J. so he wouldn’t feel isolated. And they began what Shelly calls a journey of prayer.
In the beginning, all they asked from the Lord was a way to communicate with their son, a way that would allow them to see A. J. inside the spasm-riddled shell that housed his tender soul. One day A.J.’s body was so deeply drugged that Shelly couldn’t see him inside there, and she felt helpless to do anything but pray. Later that same day, A. J. was violently ill, and Shelly believes it washed some of those drugs out of his system. She looked into his eyes and saw him. And he looked back and saw her. “I knew then that God really was with us and that He was in control. It started my journey of trusting that God really would do what He was going to do. I just didn’t know exactly what that was.” She also felt strongly that it was God’s way of letting her know that she really needed to stay on top of A.J.’s medications. They longed to find an answer buried in the tests, diagnoses and failed attempts at treatment. Instead, Shelly and Chris found themselves frustrated over what seemed to be a discrepancy between what they thought God’s agenda was and what He was really doing. “To be gut- level honest, there is still a part of me that wants God to do it my way.” She confesses that it’s an every day battle.
Over the next two years, A.J. regained some function. Shelly is an occupational therapist and knew what exercises would best help him, but as his mom it devastated her to have to inflict physical pain on him in the process. In time, his hands stayed open and they desensitized to the point that she was able to hold them in her own. He learned to feed himself and was able to walk to a certain degree. He regained some speech but spoke much like a toddler would. That was how they lived for a time. There was progress, and each improvement brought them a sense that maybe, just maybe, they could breathe someday. Then puberty hit. A. J. regressed and soon he was in a motorized scooter.
Still looking for answers, Shelly began to do her own research. She discovered Deep Brain Stimulation (DBS), a procedure that had proven successful in some patients with Parkinson’s. By this time, God had moved the Snitkos to Alabama, and Shelly was not at all surprised to discover that the DBS procedure was being done just a few hours away in Atlanta. However, it had not yet been approved for dystonia, so insurance would not cover the procedure. They began to discuss fundraising options. Knowing they couldn’t afford it on their own, they stepped out in faith anyway and made their way to Atlanta where they would begin assessments at Emory University in the coming days. Once they settled into their hotel, Chris turned on the TV in their room looking for weather information. Instead of the weather, they heard a report about a 16 year-old boy that was having the same surgery. The Food and Drug Administration had approved the DBS procedure in dystonia patients for humanitarian reasons that very day. “My husband and I looked at each other. Our jaws dropped. No fundraising! Insurance will pay for this thing. It was so God.” Shelly and Chris followed that boy’s amazing progress, saw his success, and their hearts filled with hope.
Time For Surgery
A.J. had to remain awake for the ten to twelve-hour procedure. A few days before the surgery, the Snitkos attended a community bonfire, and friends and family prayed over A. J. Later he told his parents he held that comforting memory in his mind throughout the long procedure. “How do you remind your child of the presence of God when he can’t have anything in the operating room? You want to give your child something, but you don’t know how. But the Holy Spirit does. God gave A. J. that picture in his mind. I’m telling you, the Holy Spirit really does intercede when we don’t even know what to pray.”
After surgery, there was some improvement but not what they had hoped, and Shelly found herself wondering whether she was putting all of her confidence in medicine rather than in the God who loves A. J. even more than she. Shelly had to ask herself whether she would be okay if everything turned out differently. They hoped, expected even, that the surgery would do wonders like it had for that other boy, but in reality it would not be the success they’d thought.
In 2006, A. J. set a goal for himself. He decided he would walk across that stage at his high school graduation ceremony. He had surgery on his legs to help him walk again, and Shelly pulled everything she had out of her occupational therapist arsenal and “rehabbed him to death,” as she puts it. She didn’t know anyone with dystonia. There was no one who could guide her. It was a constant balancing act between pushing him too hard and not challenging him enough, but the effort paid off. What a blessing it was for those who were there that day to witness it! A. J. walked across that stage just like every other member of his graduating class and received his diploma.
A. J. is 27 years old now, and as he grows older, he regresses. He went to college for five years and did well, but his deteriorating condition made it nearly impossible to continue. As of now, he has no job, and Shelly says he mostly hangs out with her. He is able to stay home alone for short periods of time. “I am not patient by nature. I HAVE to lean on God through this because I am also not naturally kind and gentle, loving or understanding. Every day is not a good day.” But on days when she manages to be all of those things for those around her, she says she knows it is a supernatural thing.
The Snitko long-term plan no longer includes an empty nest for Shelly and Chris. They are learning that God’s plan for them likely does not involve some miraculous surgery that will make A. J. better. They are accepting that if they are going to be doing this for the long haul, they are going to need help. In order for the church to be the church the way God designed it, Shelly realizes they will have to humble themselves so the body of Christ can BE the body of Christ. It means they must make their needs known, ask for help, graciously accept help that comes and be okay with it when others are not able.
Over the years, God has erased the strain Shelly felt trying to fix things. What shackled her at first — the pain of seeing her once vibrant child now trapped in an uncooperative body, the difficulty she faced trying to comprehend a neurological movement disorder, the disappointment that came when promising surgeries didn’t deliver what was hoped for — has limited power over her now. Shelly has learned to be content with A.J.’s ever-changing condition. She daily surrenders him and her family to God’s plan, knowing that the result, however challenging, is sweeter and produces more fruit than anything they could have ever dreamed on their own. God’s grace truly is enough. The truth of 1 Peter 5:10 is borne out in all Shelly has tasted, seen and experienced. “And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen and establish you.” Every day spent on the journey makes their family stronger, and in Christ, Shelly has found the strength to endure far beyond anything she thought possible. Her discouragement and fear have been replaced by a hope that gives them a rich, meaningful life full of joy.
“We laugh…a lot. We love life. We have a joy that I cannot contain despite a challenging life — quite possibly because of it. Dystonia is a part of our journey. It doesn’t define us, and it certainly won’t cripple us. We are spoken for, called to represent Him no matter what we are facing. Our citizenship is in Heaven. So we press on with a song in our hearts, fighting the good fight and persevering to the end. We seek to be an encouragement to others facing trials of all kinds, helping them to lift their eyes to Jesus. Here, we are ambassadors for Christ.”